Monday, March 30, 2015

THE WOES OF VUR

There's nothing worse than when your child is ill or injured (apart from the more morbid scenario that I cannot bring myself to type). It's heart wrenching to see your child in pain and easier to feel pain yourself.

We knew from the 36th week of gestation that our little Luca had hydronephrosis and from his 3d week of life that he had VUR. For the first two months we had him on preventative antibiotics but as he had stomach upset and a persistent yeast infection and we were giving it back and forth to each other from nursing and as we were afraid of the longterm consequences of daily antibiotic use, we decided to stop giving him antibiotics when he was two and a half months old. We had hoped that by diligently cleaning him, we could avoid an infection, but this weekend, our little ray of sunshine fell ill and it was confirmed to be a urinary tract infection- which with his high grade reflux (between stages IV and V) we know has reached his kidneys.

When you know your child has a condition - such as Luca's VUR - you base everything around the condition. We use cotton diapers so that we know when he has peed and more importantly, pooped, so that he is changed as quickly as possible. Our child has never spent more than 2 minutes in poop and that is probably quite an exaggeration as thankfully he has never pooped in his sleep and we are ever ready to bathe and change. Our policy used to be that we would bathe him every time he pooped, then we decreased our war policy to only bathe when poop reached his penis and if not, to simply diligently wipe. I now worry that the decrease in bathing procedure may have led to his infection so we are going back to bathing each time there is any poop. I wish there was a protective shield that my son could wear so that when he pooped, none of it would touch his penis, but of course no such poop shield exists. What material would it have to be so that pee could seep out but no bacteria from faecal matter would enter and that it would be comfortable and breathable and not cause skin irritations? I don't know, but I am going to try an added cotton layer on the front from now on. The bastion diaper - tying a cotton diaper the usual way and then placing an extra layer of cotton at the front. I do not believe of course that cotton is impervious to bacterial contact but I do believe an extra protective layer may help. Whether I will be able to dress him like that without him complaining is another matter....

Any time our kid gets sick or looks like he is getting sick, we are immediately concerned that it may be a UTI. The poor kid. We are always sticking the thermometer up his but and inserting the catheter in his penis. Two weeks ago Luca got sick for the first time. It turned out to be an ear infection but due to his VUR, we had to rule out a UTI. So when he had a high fever, we had to test his pee. Babies don't pee into a cup of course so we had to play the waiting game with the baggie inside the diaper. Unfortunately my son peed right before they applied the bag and as he was ill and had no appetite, he refused both the breast and the bottle. After five hours of holding out and still no pee, with the possibility of a kidney infection worsening, I caved in and allowed a catheter. I cried when they couldn't even a get a drop - the kid was dry. They gave him an injection that would attack both an ear infection (as some puss had been observed and this was more likely than not the guilty party) and a kidney infection and we played the same waiting game the following day. This time I refused a catheter and decided to wait until the morning as he already had antibiotics working for him from the infection. To our delight, the fever went and he was all better. He was poked & prodded for nothing.

Yesterday morning, however, he had another high fever and of course we immediately had to assume it was a UTI. This time we bagged him at home, applying alcohol before we did so and hoped that he would pee and we would obtain a negative result so that we could go home. Unfortunately, we received a positive result and had to catheterize him. Baggies have a very high false positive rate as it is very difficult to sterilize and avoid any bacterial entry with them, however much we wash the baby and our hands. While a positive baggie cannot be trusted, a negative baggie can. Unfortunately for us, it was positive. Our poor son is just 5 months old and we've had to insert a catheter in him 4 times. This time the catheter at least got some urine but unfortunately it was positive. We gave him the injection right away and today he is much better and has no fever.

Now we have to decide whether to put him back on daily preventative antibiotics. The good news is that his liver has kicked into gear and we can now use narrow spectrum antibiotics with less consequences. We already provide him probiotics so a low dose may not kill all his gut bacteria. There is no guarantee, however. We are also worried that longterm use could lead to resistance. Moreover, the literature is divided as to whether longterm preventative use actually prevents recurrent kidney infections. I think for now, we'll continue without but if he gets another infection and in a relatively short period, we will probably relent and put him on the narrow spectrum ones. It's a choice we don't want to make, but unfortunately, that we must - at least until his flap grows sufficiently to prevent reflux.

The next decision would be whether to have surgery and when. We haven't looked into that as of yet as he is too young and had been asymptomatic. Now, we cannot say that, but we hope that this was his first infection and his last.